Doctor Still Doesn't Believe Me

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by TeaBisqit, Apr 14, 2008.

  1. TeaBisqit

    TeaBisqit Member

    One thing that really bothered me today with my doctor's visit was that she asked if my symptoms could just be panic attacks. And I just wanted to punch her. I have been having severe NMH/lightheadedness with numbness in my limbs for more than ten years. It is my main disability complaint. And it is only releaved temporarily, if I use something to raise my blood pressure. Most of my symptoms are related to NMH/POTS. I believe my audio processing disorder is related to it, as well as my extreme sound sensitivity. And of course, the weakness and fatigue. If I have to stand up for more than a few minutes, I start to get the numbness in my limbs. To have someone suggest that it "could just be a panic attack" is not only an insult, but just such stupidity. You would think that after all these years, doctors would finally realize that even NMH/POTS is REAL. Yes, I get rapid heartbeat from it, but it has to do with that the bloodpressure gets messed up when I'm standing. I get panic attacks from being ill. I get scared when I'm someplace where I have to stand and there is no chair and I'm getting the numbness in my limbs and I know that if I don't sit or lie down someplace soon, I will be face first on the floor. That alone will make me panicky.

    I am just so sick of these "degreed doctors" not knowing what they are talking about. And they will do anything they can to try to make it like we're all mentally ill or have anxiety issues. I'd seriously like to give them an anxiety issue. I wish we could sue for huge fines that they treat us this way.

    She went on to question me as to whether or not I'm agoraphobic/afraid to leave the house. And I was like, NO. My problem is that I am too ILL most of the time to leave the house. I am in too much pain and fatigue to go anywhere. Or I'm too lightheaded on top of the pain and fatigue to go anywhere. Again, I wanted to punch her.

    She had no words for my extreme sound and light sensitivity. I would love for her to try those symptoms on some time and see what it's like. And she had no words for my audio processing disorder. Gee, I guess I'm making that up, too? Yeah, right. It's just so fun to ask people to keep repeating themselves all day long cause I can't understand a single word they're saying to me.

    She told me my heart pain is probably just from the fibro. Really? Not quite. The last doc I saw said I've got a weakening of the left ventricle of my heart due to CFIDS and it is progressive. Now, since that was awhile ago, and I've been getting chest pains all year, I'd say it's probably more than that. But I guess this doc will just wait till I'm in the emergency room or dead to do anything about it.

    Finally, she threw me a prescrip for Tramadol to shut me up about how much pain I'm in. And I'm scared to take it cause I'm not crazy about the fact it can cause seizures as a side effect in some people. It just scares me. So I haven't touched it yet. Not to mention, I keep hearing how addictive it is, even though she said it's not.

    So that was pretty much my doctor's visit. And I got the standard look, too. You know the one, "Oh, she can't really be as sick as she claims to be. Surely she must be making this up or crazy." BIG SCREAM.

    When I went for the xrays, the tech was just as clueless. I was in so much fibro pain and laying on the xray table and being told to move about on it was seriously painful. And when I told the tech it was really hurting my legs and hips because of my fibromyalgia, she actually said to me, "Oh, I don't know what that is." Really? It's only been on tv lately like EVERYDAY with the fibro commercials. And most people have heard of fibro whether or not they believe in it, they have heard of it.

    I could write a book about the abuses we suffer at the hands of the medical community, but I think people already have written books on it and no one seems to care, except us.
  2. Springfling

    Springfling New Member

    I think having a doctor like that would be enough to make me feel worse. There is enough stress as it is when you are ill, but much worse when you feel as if no one is listening or believes you.

    I think I would be finding a new doctor who is familiar with Fibro and more understanding. It makes a big difference when your doctor is on your side.

    In the meantime, I do take Tramadol and it helps with some of my pain. I don't feel like it is that strong, but I have heard others say it helps them a lot.

    I understand that you are uncomfortable taking pain pills, but if it gets to bad, maybe give one a try. I hope things will get better for you and you can get some help!
  3. doxygirl

    doxygirl New Member

    the doctor ignorancy drill!!!!!LOL

    Not funny at all, but if it makes you feel any better I do understand what you went through today!

    IT IS NOT YOU IT IS YOUR DR!!!!!!!!!!!! She needs a serious lesson in the "FACTS" of fibromyalgia and ME PERIOD!...

    and further more she should not be treating fibro patients if she is not going to educate herself on the severity and realness of this dd!!!!!!!!

    I feel ashamed for her!
    and SHAME ON HER!!!!!!!!!!!

    You are probably gonna feel like "punching" me LOL but I agree with the others sweetie....TIME TO FIND A NEW DR!

    I cannot begin to describe to you how refreshing and comforting it is to have a dr who is educated and knowledgeable with fibro and me....it is so nice to have sometime "TELL YOU" why you are having the symptoms you are and why you are feeling the way you are!

    The DR I have now is so educated with fibro, me and pain issues that when I start to tell him something that is going on he usually finishes up "for me" and tells me why or why.....

    It is true that there is no test for our dd YET, but that does not mean that ALL Dr's are ignorant like yours....( sorry I mean no offense) BUT that is exactly what she is...

    Seriously you do NOT need to have to defend yourself on top of dealing with the heavy list you already have with this dd!

    PLEASE find a new dr.....you will never regret it once you find one that understands....it is overwhelmingly heart touching to find a compassionate dr that knows what YOUR talking about!

    FIND A DR THAT "SPEAKS YOUR LANGUAGE" :) which is the fibro language :)

    Will you promise me you will at least think about it?

    Remember there is that GOOD DR LIST at the top of the front page of this board........MANY of us have been able to find good drs so maybe think of starting there!

    If you have no luck let me know and I will do some research for you....:) I don't mind at all!

    Iam sorry for your day....I had a terrible day myself.....wish we could go for massages and root beer floats together :)

    Hugs
    Doxy
    Doxy
  4. TeaBisqit

    TeaBisqit Member

    I believe they are caused either by the NMH or the inflamed nerves in the spine going up to the brain. But I did read somewhere that NMH can cause them, at least the audio because it interrupts blood flow to that part of your brain that processes. Low grade encephalitis/brain swelling can also cause this.

    What I get is literally like I'm listening to a foreign language. It's very strange. Like someone dropped me into a different country where I don't speak the language. I hear what people are saying, but I don't know what they are saying. The brain won't process the words. But what usually happens is, I'll understand a few minutes later what they said. So it's like my brain just isn't catching up with the sounds. Like if I don't ask someone to repeat, and then I go over in my mind what they said, a few minutes later, I'll understand.

    The sound and light sensitivity are so bad for me that many, many times I have wished I could die from that alone. I've spent time wishing I were deaf just so the pain would finally stop. But it never does. The light feels like knives in my eyes, pretty much every day. When it's night, I pray for it to stay so. I'm so sensitive to the light that when it just starts to turn into dawn, I can feel it coming. And I end up sitting there like, please not again. The sound is so painful, every day. All sounds hurt. I nearly die anytime the phone rings. I've had to cover my ears. There are days when it is less severe, but mostly, it's very bad. I can watch tv most of the time, but I keep it low and when I'm really in alot of pain, I have to turn it off. Music for me is a bittersweet luxury. My favorite songs hurt. And I have to listen to music sparingly because it hurts too much. And yet, sometimes it's the only thing that will relax me, so I suffer for it.

    The best way to even attempt to describe the sound and light pain is like if you've ever had a severe migraine headache or hangover. Except, picture it without the headache, just the sensitivities.

    Finding a good doc in my area is pretty much impossible. All the local ones are worse than the next. They are hostile to CFIDS/FM and just want to throw a nut drug at you to shut you up. There is a good one that wanted to treat me, but he's like two to two and a half hours away from here and I'm nowhere near up for that kind of trip, so I can't go.

    I'm flaring so badly today, I am tempted to take the Tramadol. But what I really need is alot of rest. Rest seems to be the only thing that ever calms some of this down. When I rest up with as little stress as possible for a few days, I'm better to where all this is more tolerable. But that's the only thing that ever really helps.
  5. greatgran

    greatgran Member

    Know exactly what you are talking about when it comes to doctors and the "look", have had that experience many times.

    So, I have changed doctors and I don't know if its me and the way I try to explain things or what but get the same treatment from all of them. We live in a small city and our pickings are few.

    The one doc that I did find that helped me with my disability, just flat out told me he knew the disease of CFS and FM is real but didn't have a clue how to treat it or what to do about it, but he was willing to work with me and I did get my disability. He did send me to a rheumy who was worthless. Told me to go home take water exercise, and tylenol.

    Getting back to your sound and light sensitivy I have problems with that, can't stand to go into wal-mart because of the lights, sounds make me want to scream at times . Proabably not as severe as yours but xanax helps me with the sensitivity or helps me tolerate .

    Hope you find some answers,

    greatgran


    [This Message was Edited on 04/15/2008]
  6. kellygirl

    kellygirl Member

    If there is one near you, that may be your answer. We have 2 an hour away and they seem to help a lot when a patient is getting nowhere, at least in my experience.

    We usually have to go out of our area when it's a serious matter.
  7. TeaBisqit

    TeaBisqit Member

    They said my cholesterol is a bit high and I should lose weight and EXERCISE. I was so mad. I've only been saying for SEVENTEEN years that I cannot exercise due to this disease. I feel like we live in the dark ages.
  8. Nutopia

    Nutopia Member

    Hi there. I work for Nutopia, a TV production company in London and we are looking for someone who feels/or at some point have felt convinced they have something wrong with them but the doctor won’t take them seriously? We would not need you to appear on TV at this stage at all so not to worry but we would need to record a skype interview with you so I can show the rest of my team. Give me a call on 0207 034 9697 or email me on hannah.shelley@nutopia.com